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I think it could be of value along with a more detailed look at processes and how they should work. Ideally interviews with people working in a variety of clinics around how they would capture and report treatment deteriation and harm.

Was that one of the CDC studies where they used the full sf36 survey (not just the physical function part that PACE uses).

My daughter lost a lot of weight as well and has no appetite (and nausea). But I think Anorexia is a general term for loss of appetite whereas anorexia nervosa is a particular disease. But the term gets confused.

If people have experience of reporting harm and deterioration to UK clinics it would be interesting for us to have a record of their experiences.

And I think this is the point of doing a GWAS study in that it points to potential causal things (or at least things that predispose).

At the very least they should have been told to present the results for their two trials separately.

Possibly. I've also seen people talk about the micro-biome with anorexia so it could be something in that that triggers genetically susceptible people. Something they point out in the guardian article is that they don't have a very good success rate for the psychiatric approaches.

I've added a thread on this here: https://www.s4me.info/threads/genome-wide-association-study-identifies-eight-risk-loci-and-implicates-metabo-psychiatric-origins-for-anorexia-nervosa.10396/

Interestingly the had a sample of 17000 cases. They found associations with Genes associated with metabolic processes.

Given the recent blog by @Simon M on GWAS and ME and Chris Pontings interest I thought this article may interest some people. It looks at a GWAS study of anorexia nervosa...

I suspect that no one has really examined how the RECs work or whether they are doing an adquate job. With ME patients looking they should be worried because there procedures don't seem to be fit for purpose. They seem too ready to allow protocol changes, with Crawley they have allowed...

The thing I don't like about this is the working age average. The working age catagory includes about 22% of people with health problems and as the median was around 95 with the median being 100 for people without health problems. So the average being 88 seems to downplay normality a bit.

Lot they do doesn't make sense

yes there doesn't seem to be a consitent position that explains things.

It could be a no from the schools as data owners who would not have asked for consent for this purpose.

maybe it made the protocol look better or was required? Do we know what the ethics committees said about the protocols?

No @JohnTheJack got hold of a data set which is available through a different thread. A number of people looked at it and the data did represent the results as quoted. There doesn't seem to be actual school attendance data. But even this may not be accurate as kids may attend school when pushed...

It would be the DPA rather than GDPR given the timing but I would have thought using registration data for a clinical trial without additional permission from the parents or students would be dodgy. Concent for a purpose was an important part of the DPA I believe. I'm not sure if Crawley could...

So she lied to either the BMJ or Buzzfeed either way it doesn't play well with the BMJ taking assurances from the authors.

I seem to remember that in an interview Crawley claimed that they had validated the school attendance figures using the school records (it may be a bbc one but can't remember)